Thursday, July 31, 2008

Jessie Gets to GO HOME ! It's Time for a PARTY !

http://www.hemifoundation.org
http://www.prayforjessie.org

I have two really exciting pieces of news today!! The first is that the doctors told us yesterday, that Jessie will be discharged on Thursday, August 7th!! Horray! and Praise God! After two months, our whole family will finally be back together again!!!

In honor of Jessie's return, Caren Jennings and many other "angels" are plannning a special evening. All of Parker County is going to have a party for Jessie when she comes home to Aledo. (As close as she is, she has yet to set foot in Aledo.)

On Saturday, August 16th, from 6-9pm at Bearcat Park in Aledo, everyone is invited (and I do mean everyone!) to come and meet our family and Jessie! We really can't wait to meet so many of you in person and thank you for all you have meant to our family these past few months.

There is a wonderful playground for the kids to play on and we'll have a band playing. Weatherford Regional Medical Center is selling peach "Juleps for Jessie" and will donate the proceeds to The Hemispherectomy Foundation -wow! Ridgmar Mall is helping us out with many things and even donating a gift certificate for a drawing that night! We've got some clowns coming and there will be food! It's all starting to come together! We're really excited to be celebrating Jessie coming home to our home. We miss her there.

I know it's going to be a hot August night, but we'll have lots of tents and tables and chairs for everyone. As things come together more, we'll pass that information on to you. If a business would like the opportunity to get involved, please call Caren Jennings at 817-308-8654 or email her at caren@hemifoundation.org and speak with her. She is organizing this event for Jessie.

God Bless you and Thank You again for all your prayers and support. I look forward to seeing you at the homecoming party!!

Cris (doin' the happy dance)

http://www.hemifoundation.org
http://www.prayforjessie.org

Tuesday, July 29, 2008

Before Seizures, Hospitals, and Doctors

http://www.hemifoundation.org/
http://www.prayforjessie.org/


I started looking through old pictures tonight of Jessie before she got sick. It was a bitter-sweet kind of journey, but all-in-all, I enjoyed the walk down the path. She has always had such a great outgoing personality, and that hasn't changed post-surgery. Thank God!!
I will post a few of my favorite memories.




Jessie and Matt's bond building early.


Introduction to Baseball.

Having fun with her stinky brothers!



Jessie's first haircut.


Summer Fun!

Glamour Girl !!

She has always loved to strike a pose.

And Yes, she has always loved pink !

And her dog, Carlie.

The doctors are begining to talk about release dates...and Jessie will finally get to come home. I'll keep everyone posted as to what they say.

Thanks for the prayers, encouragement, and also a big thanks to those of you who have brought food over. It has really helped with our transition back into the real world.

Have a Blessed night and tomorrow.

Cris

Monday, July 28, 2008

On Credit

http://www.hemifoundation.org/

http://www.prayforjessie.org/

This past Sunday, I finally got to go back to church and it felt really good. When I drove up to New River Fellowship, near Aledo, It just felt like being home again. Unfortunately it wasn't the whole family, because Kristi was up at the hospital, and Matt was off at Church Camp. But Jake, Josh, and I sat together and bonded as we listened to The Word and a great lesson on what a church should be. Quite frankly, I think that the twins couldn't wait til it was over so thy could play their DS game...oh well, I enjoyed being back.

Now I know that the Building is not "the church". I know that the church is the congregation, the mission, the dedication to our Lord, and so much more. But nevertheless, it felt good to be under that roof. It felt more "official" as I sat there and prayed in silence and thanked God for all that He has done for Jessie and our family over the past months. I praised Him for the many wonderful and amazing things that I saw in Baltimore. God has heard me thank Him and praise Him many times over the past few months (many time per day), but this simply felt more formal and ceremonious, because I was back at New River. The hospital PICU or Rehab just doesn't exude the same atmosphere.

Anyway, before I got to church that morning, I decided that I was going to dedicate that service to thanking and praising God for getting Jessie and our family through the past two months. I still listened to Pat Kelley's message, but every chance I got, I closed my eyes and gave our Father in heaven the credit for everything that has happened. He did some wonderful things and I praised Him for the wonders that He showed us.

It's kind of interesting when you think about it, but when you thank someone, you are giving them credit. You are saying "You did something and I appreciate it." I guess when you thank God, you are giving Him the credit too. Or as most would say, "giving God the Glory".

You have to excuse me, I'm not too good at church speak. I'm so glad that I can pray silently, because I'm quite sure people would be amused at what I tell God. Don't get me wrong. I very much admire those that can pray and speak aloud about the Glory of God. I find myself so captivated by their ability to put it into beautiful words, but I unfortunately don't have that gift.

So, after the service was over, I felt a deep calm. I felt like that I was finally able to officially give God the Glory in which He is worthy. Maybe it was the music. Maybe it was the message. Maybe it was getting a good night sleep finally. I think that maybe it was God saying "your welcome". I don't really know, but I was at peace.

I hope that all of you who have prayed for Jessie and for others in need feel the same kind of peace as I do. We so much appreciate your prayers. The power of prayer, combined with the God given talents that each of us are blessed with is an incredible force.

I know that Jessie has a long road ahead of her, but I also know that prayer will help her through the toughest of times.

God Bless all of you who have prayed for Jessie and who have kept up with her story. We are deeply touched.

Cris

P.S. Here is a really cool video that what passed on to me by a friend. It is really fun to watch. Thanks Mel. http://www.mychurch.org/blog/30635/coolest-video-ever

http://www.hemifoundation.org/

http://www.prayforjessie.org/

A Pink Surprise and a Little Fun

7/28/2008

Jessie had another great day, working hard in therapy. Today the therapy dogs came to visit - that was a real treat!

The last few weeks have been pretty busy and a few stories didn't have the opportunity to be told so I'm playing a little catch up this evening. The first was a great surprise and the second is just a few pictures of Jessie and Papa having a little fun.

On July 18, the day Jessie came home to Texas, her Gram and Papa Kelley called to tell us about a surprise they received. The story actually began last year when a volunteer Hollyhock plant started growing in their flowerbed next to the aspen trees. It never bloomed but it was pretty so they left it alone, expecting it to die over the winter. Well the plant came back and by the first of July it was full of buds. This plant started opening PINK blooms the day Jessie came home! What a wonderful, PINKALICIOUS surprise!

Over the July 4th holiday weekend, not only did the boys visit Jessie but Gram and Papa Kelley were there too. While the boys were on their trip to see Camden Yards and the Rangers play the Orioles, we had a little fun too! Ladies and gentlemen, I present Hannah Jessie Montana and her sidekick Papa Montana!
Have a great evening and try to stay cool! It was above 105 here today! I guess it was a good day to stay inside for therapies!

Kristi

Saturday, July 26, 2008

Texas Tech Red Raiders Win 2009 BCS National Championship!!!

http://www.hemifoundation.org/

http://www.prayforjessie.org/


Texas Tech Red Raiders Win 2009 BCS National Championship!!


OK, Maybe that Title is a bit premature, but with guys like these two above...well, ANYTHING could happen!!!

Do I really need to tell you who these two guys are?!?!?! #5 is Michael Crabtree! #6 is Graham Harrel ! Do I need to tell you more? These guys are only the number 1 receiver in the NCAA and the number 1 quarterback in the NCAA !!

These guys are part of the team that will lead the Texas Tech Red Raiders to the Jan. 8, 2009 - BCS National Championship Game in Miami!!! And with character like this, just the type of team leaders that can do it.

Thanks Graham and Michael for doing such a cool thing for a sick kid. With any luck, Jessie and the rest of us will be in Lubbock to watch you defeat Nebraska for homecoming. We have the phone on speed-dial for Monday when the tickets go on sale, because we know they'll go fast.

We've NEVER missed a Homecoming game!! Since 1983!!

Once again, thanks for doing such a cool thing for Jessie. Now go lift some weights, or run bleachers, or catch tennis balls from that tennis-ball-shooting-machine-thingy!! Do something!! First game is just around the corner and we EXPECT a National Championship this year!!!

Jessie has already inspired one National Championship this year (Aledo Ladycats High School Softball), so I don't see why she can't inspire an NCAA Football Championship. Just Believe!

Go! Fight! Win!

Hit'em! Wreck'em! Graham and Michael!

Cris Hall - TTU 1988, Kristi Hall - TTU 1987, Matt Hall - TTU 2017, Jake Hall - TTU 2018, Josh Hall - TTU 2018, Jessie Hall - TTU 2020!

P.S. Please tell Coach Leach that Jessie wants to tell him a "pirate" joke the next time she sees him. "What is a pirate's favorite letter?" ...."ARRRRRR !"

Special Thanks to Graham and Michael...and the crew in media relations, Chris Cook, Tammi Hoffman and Blayne Beal. Also, Thanks Steve Maines.

http://www.hemifoundation.org/

http://www.prayforjessie.org/

Friday, July 25, 2008

Things Get Better Each Day and More Visitors!

http://www.hemifoundation.org/

http://www.prayforjessie.org/

It's Friday, and Jessie has been at Cook Children's Hospital's "Transitional Care Unit" now for a week. Can you believe that? We've been here a week and Jessie has made phenomenal progress. I can't believe what has happened just in one week.

Jessie is walking!! We have to walk with her and hold a belt in case she trips...but she IS walking on her own!! Can you believe that!!! Things get better each day!

Today, she wanted to hop like a frog and she did....she wanted to bend down and pick something up and she did. When we got here a week ago, she could only stand and still needed about 50% assistance to walk. Now she wants to walk everywhere...even to therapy.

Thanks and Praise to God for watching over Jessie and healing her. And Thanks to Johns Hopkins Children's Center, Kennedy Krieger Institute, and Cook Children's Medical Center for providing the hands and guided by their talents from God to make things happen. Everyone: The doctors, surgeons, specialists, nurses, techs, nutritionists, therapists, child life, pastoral, and of course all the friends who visited to lift Jessie's spirits.

Jessie hasn't had any seizures since surgery on June 11th. I went back and watched newscasts before the surgery, and I couldn't believe how bad her seizures were. I had forgotten how much she twitched.

Below is a short clip from KTVT of Jessie up here at Cooks. It's a well done segment.
http://cbs11tv.com/video/?id=30600@ktvt.dayport.com


Jessie's Aunt Cyndi and Cousins Kacie, Adam, and Colton. Also Mom and her Stinky Brothers. You can see it on her face how happy she is to be back around family again. I think that having family and friends close accelerates the whole healing staff. Perhaps that is a reason to go ahead and start trying to get her home to Aledo. Hopefully we won't be up here at Cooks more than a couple of weeks more.

Thanks to Aunt Cyndi and the kids for helping us out the past week. We appreciate it guys and have a safe trip back to Lincoln, Nebraska.

Here's Jessie riding the rehab bike. She does really well, and can pretty much drive it herself.

The Adamies came for a visit today. Brett, Jessie, Nicki, and Shelly.


Look at these guys. They really lit up her face!!


After a hard day of rehab, it's time to drift off to a pink dream. You have to wonder how she got that left arm way above her head like that.... We didn't put it there.

After reading the book "Pinkalicious" today, she asked me tonight if too much pink would turn you pink. I told her no that it couldn't really happen. Thank goodness, or she would already be pinker than cotton candy.

Medical Notes: They've asked us to do some Botox injections on her thumb to loosen it up, however, based on an FDA warning and advice from quite a few friends of Hemi kids, we have chosen to not do Botox injections. We haven't heard of any hemi kids who get lasting results from them..and they can be very painful.

They are beginning to look at new ideas for orthotics as well for both her hand and leg. I can't wait to see what they try next and how that affects her use.

Jessie has some very random, but semi-purposeful movements in her right arm, but Dr. Carson tells us that it is just her brain rewiring. It is evidently normal for these kids.

She has had some nausea and vomiting in previous days, but none in the past 2 days. She looks really good.

God Bless all of you for keeping up with Jessie and for your prayers.

I hope that everyone has a fabulous weekend.

Wednesday, July 23, 2008

WJZ Baltimore to Run Farewell to Jessie Story Tonight

I just heard from our Baltimore representative of The Hemispherectomy Foundation (thanks Jane), that WJZ will run a feature story tonight saying farewell to Jessie and welcome home to Texas. There is a teaser out on http://wjz.com/ right now, but the big story runs tonight and they are usually pretty quick to get it up on their website.

So check out http://wjz.com/ tonight sometime after 10:00 PM CST, and it should be posted. I beleive that Channel 11 may be running something as well if they get the footage that they need from Cook Children's Medical Center.

In Celebration of Jessie's Homecoming, The Hemispherectomy Foundation is excited to announce that after the broadcast, The Hemispherectomy Website will be on-line!!! So after the broadcast, be sure to check out http://www.hemifoundation.org .

Blessings to all for all of your prayers, comfort, support, and work in making The Hemispherectomy Foundation a reality!!

Kristi, Cris, Caren, John

Tuesday, July 22, 2008

Visitors from Stuard Elementary and Jessie's Walker

http://www.prayforjessie.org


Here's Jessie trying out her new walker. Go Girl !! For some reason she thought this was really cool, and that Mom and Dad would be upset that she got to use a walker...so we played along and Jessie got some good therapy.

Jessie had a bunch of visitors from Stuard Elementary. Thanks Guys!!!

video


Here's a Video of Jessie walking with her walker!!!
Go Jessie Go!!

http://www.prayforjessie.org

Sunday, July 20, 2008

Pinkalicious!!!

http://www.prayforjessie.org/

Jessie had some visitors up at Cook Children's Hospital the past two days. Her spirits are up, and Jessie knows that she is close to home. We so much appreciate all the well wishes from everyone

When we got to the airport, we were greeted by the Jennings crew, Gleatons, Kelms and Shields. It was extremely touching and overwhelming to be greated by everyone and the ballons and signs were marvelous.

At the Hospital, there was more of the same, and Jessie finally got to see her Grandma and brothers again.

For those of you who have seen Jessie, you know that she is doing remarkably well. For those of you who haven't, I must tell you that she is doing very well. There is no memory loss, no personality loss, no speech loss, and no cognitive loss. She has some vision loss in each eye (hemianopsia), and her left leg and left arm are VERY weak (paresis). She is able to stand, and walk with some assistance now, and we see improvement daily.

Here is Jessie and her buddy Alexandra. Even the smile is less crooked!!

From Left to Right (me, Kraig Smith, Scott Grooms, Shelly Smith, Val Grooms, and somewhere running around are Cassi, Alexandr, Ayden and Ashton)


Alexandra, Jessie, Cassi



Robin Seay (Jessie's Principal at Stuard Elementary) Also, Jessie's bus driver, Miss LaShaunda (or as Jessie would say Miss MaShawnda) and a friend came for a visit, but we forgot to take a picture.


Kristi's Sister and Jessie's cousins arrived from Nebraska today. Aunt Cyndi, then Jake, Casey, Adam, and Colton arrived just in time to see the arrival of the pinkalicious wheelchair from Sujata.
Also, Jessie's Uncle Alan, and Grandma were there for a visit today, but they were a bit camera shy.


The pimped-0ut wheel chair was donated by Sujata in it's raw form and decorated by some pink angels.


Jennie Suchocki and her daughter. Caren Jennings, Traci Cottrell. There is no other wheel chair like it in the world.

Matt pushing his little sister around in her new ride.


The brothers gettin some lovin from Jennie.

I need to go to work, so these late nights are going to have to stop. It's way too late to be staying up on a school night.
God Bless! Cris

Saturday, July 19, 2008

Back In Texas at Last!!!

http://www.prayforjessie.org/




Jessie and her buddy Bella at KKI, saying thanks to Midwest Airlines for all of their help. BJ, you are the Greatest!!!!

Jessie is finally Home!!...well at least in Texas and close to home. We flew yesterday eveing, and were met by lots of friends and more TV cameras than I have ever seen in my life!!

We drove over to Cook Children's Hospital in Fort Worth and got Jessie registered, and they were ready for her. Jessie had a grin from ear-to-ear when she saw her brothers and Grandma. It was amazing!!! She didn't even seem to mind beging back in another hospital.

Jessie can stand pretty well, but still need a lot of work to walk independently. We are certain that Cook Children's Hospital will get her walking.

Thanks to all of Jessie's Angels for guarding over her and our family. I'll keep everyone updated on how Jessie is doing.

God Bless All of You!!

Here are a few News Clips from Jessie's arrival to DFW and Cook Children's Medical Center.
http://www.myfoxdfw.com/myfox/MyFox/pages/sidebar_video.jsp?contentId=7017897&version=1&locale=EN-US

http://www.wfaa.com/video/index.html?nvid=264944

http://cbs11tv.com/local/Jessie.Hall.Returns.2.774748.html

http://video.nbc5i.com/player/?id=277475

http://www.prayforjessie.org

Wednesday, July 16, 2008

Jessie : On Her Way to Texas This Friday!!!!!

http://www.prayforjessie.org/

I'm sure that by the time most of you have read this, you will already know what I'm about to tell you. It seems that these days, the television news is faster than me!! I knew that I was getting old and slow, but this is ridiculous!

OK, as reported by CBS 13 in Baltimore and CBS 11 in Dallas, and whomever else, Jessie IS coming home to Texas on Friday!!!! Hooray!!!!!! Praise our Father in Heaven!!!

Her Fevers are less frequent, and right now, everything is a GO to leave KKI on Thursday, and fly back to Dallas on Friday, and check in to Cook Children's Hospital in Fort Worth for another couple of weeks of in-patient rehab. We are so excited!!!

For those of you who saw the report tonight, I know that you share in our joy to see Jessie ride a rehab bike and walk with assistance. It is truly a miracle of God and modern medicine. Jessie still has a long way to go, but she has come SO FAR!

I have heard that some of you want to get Jessie something as a way to say "Welcome Home!", and we appreciate the thought so much. Jessie has been so blessed by the outpouring of support through various gifts and we are so grateful. We ask, however, if you want to do something in Jessie's name, please donate to The Hemispherectomy Foundation. The donation IS tax deductible, and it will go to help many other children and their families. Jessie's room can only hold so many stuffed animals. :-)

To donate to The Hemispherectomy Foundation:

Send your tax deductible donation to:

The Hemispherectomy Foundation
PO Box 1239
Aledo, TX 76008

http://www.prayforjessie.org/hemi_foundation.html

or buy a t-shirt or bracelet from The Pinkalicious Boutique. All proceeds benefit The Hemi Foundation.

http://www.prayforjessie.org/pinkalicious_boutique.html


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For those of you who read the comments, we were honored to have Dr. Hsu leave Jessie a comment tonight. He, of course is the doctor who assisted Dr. Carson with Jessie's surgery, and let our little girl write Texas Tech on his forehead. A real humbling experience for a Michigan man! Thanks Dr. Hsu

Also, please say a prayer tonight for the Johnson family in Schertz Texas (near San Antonio). Westley, 8, is struggling with intractable seizures and his family is struggling to do the best for him. They have done so much already, and refuse to give up. Let's raise them up to God as well and hope that they find some peace for Westley and the whole family.

To give you an idea of the diversity of health issues that go on here at KKI, I'm going to pass on a YouTube video from one of the patients here. This is Isabella, and she is the cutest little 4-year-old girl that you will ever meet. On the outside, there appears to be nothing wrong. She's always smiling and so outgoing...but here is her story. Get ready for a cry when you watch this one. Remember, every kid and family up here has a story. Please pray for Bella to learn to eat! Seems simple...but it's not.
http://www.youtube.com/watch?v=EmAfYq3uDu8

Of course she is at KKI, so here is a follow up video to make you smile :
http://www.youtube.com/watch?v=JsT-ZhnmQJ0&feature=related


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Here are some pictures of Jessie at Rehab in Kennedy Krieger : Work & Play!


Here is Jessie on the Split Belt Treadmill. She does this once a day.



This thing is PT (Physical Torture). They let me try it and within 1 minute and 20 seconds, my left thigh was burning like a had run 10 miles. No kidding...and I used to run marathons. They make Jessie do it 3 times...2 and a half minutes each time!!



The right belt moves faster, which causes her to work her left leg out more...it bears weight longer.



Here's a back view. Two different belts going 2 different speeds. It's important to note that this is experimental, and Jessie is part of a study that hopes to show the effectiveness of the machine.
This is not mainstream rehab equipment.



Standing Practice!



"Oh, Well, at least I get to watch movies..."



And now the play time. The Child Life people at KKI are amazing and are really inovative in their ways of making the kids feel normal and not institutionalized. They have weekly outings and many planned activities throughout the week. This is a water fight that the kids really enjoyed. I kinda had fun too.



Macey and Jessie in the heat of battle.



"Don't you dare, Macey!!!" Watch Out Isabella (Bella) is filling up behind you!



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Good night and I hope to see most of you in Texas Soon. Thanks to all of Jessie's Angels for carrying us through this difficult journey.

God Blessings to All,

Cris

http://www.prayforjessie.org/

Sunday, July 13, 2008

The Founders of The Hemispherectomy Foundation

http://www.prayforjessie.org/

Although there have been many people involved in the creation of The Hemispherectomy Foundation, I wanted to take a few minutes to introduce some of the people who were instrumental in creating this foundation that will help many children and their families through awareness, education, and aid surrounding the diseases that lead up to this radical surgery and the hemispherectomy surgery itself.


This is, of course, Jessie (pictured with her brain surgeon Dr. Benjamin Solomon Carson). Without Jessie's dynamic personality, her love for EVERYONE and her outgoing, spunky, brave, dynamic, persevering personality, The Hemispherectomy Foundation would have never happened. She inspires me, her father, and many other people to do BIG things and to have BIG ideas. I don't understand it, but I follow it. I believe with all my convictions that our Father in heaven has BIG plans for her and the other children and parents who have survived hemispherectomy surgery and for those who help them survive...their angels.
From left, First is Kristi (Jessie's mom), who started the whole idea with a scholarship; The Jessie Hall Hemispherectomy Scholarship (JHHS). This blossomed into something much bigger, and has now become The Hemispherectomy Foundation. Next is Caren Jennings, who has worked tirelessly to set up operations, fund raisers, Internet presence, and networking to make the foundation happen. I'm the one on the right, and I think that they let me in because they feel sorry for me. ;-0

Also, we have to give credit to our Creator for inspiring many people to rally around Jessie, and then The Hemispherectomy Foundation to plant the seeds in good ground so that they will grow into fruitful trees to feed the many children and their families who desperately need it.



This is Dr. Benjamin Solomon Carson. He is the remarkable neurosurgeon, and Christian man, who revised The Hemispherectomy surgery so that it was a viable solution to ending intractable seizures and giving children and their families a better quality of life.
There are also people out there like Mikel Shelton, of Shelton, Mead & Shelton, who has graciously agreed to do the Accounting work for The Hemispherectomy Foundation and file the mountain of paperwork to make the foundation a non-profit 501 (c) 3 foundation.
And Gary Jordon, an attorney from Weatherford, who volunteered his services to ensure that our legal needs were taken care of, especially in setting up our corporation, the basis or the foundations non-profit enterprise.
And Brian Melven, who set up the first web site for the foundation, and the precursor for The Hemispherectomy Foundation website. Our first fundraiser and educational site. Pray For Jessie - http://www.prayforjessie.org/
And John Jennings (Caren's Husband), who has been working tirelessly to put into place the Official Website for The Hemispherectomy Foundation, and for setting up the books for the non-profit corporation, and helping with mailings, logistics, and so many other things.
The countless other people who have helped in so many ways to make The Hemispherectomy Foundation possible. Our next phase will be Fund Raising, Awareness, and Education. I know that there are so many more of you that want to help, and I can't wait to work with each of your to make this a world-class organization and to feel the love that will surround these children and their families.
If you want to be a part of this organization and helping these kids and their families, please send a quick note to Caren (marypoppins@uwmail.com) and let her know that you are interested in helping and where you would enjoy helping the most. We will be in touch soon to put your ideas and strengths into action. I promise that the rewards will be more than you can imagine. Thank You!!!
Warm Blessings,
Cris Hall
VP and Treasurer, The Hemispherectomy Foundation
http://www.prayforjessie.org/

Saturday, July 12, 2008

Fever Persists

http://www.prayforjessie.org

The fever has persisted and gotten as high as 102.5 today. They are able to control it with Motrin, but they can't seem to figure out where it is coming from. The blood work is pretty much inconclusive.

Fever, of course, usually indicates an infection (either bacterial or viral), but nothing significant is showing up in blood or urine samples. Hemispherectomy kids, usually have persistent fevers, but I'm not sure if these are common 1 month after surgery. I'm waiting for some answers from other parents who have gone through this process to see what their experiences were.

In the mean time, Jessie is feeling pretty good when the Mortrin is in her, and even did all of her therapy today. Sunday's are, Biblically and in the rehab world of KKI, a day of rest.

I hope that everyone has a Sunday full of rest for the body and for the spiritual soul. Please say a little prayer for Jessie, that this pesky fever goes away, and we can come back to Texas next week.

I've added blogs of other Hemispherectomy kids to my blog list on the left bottom of Jessie's blog. These are either recent kids who have undergone the procedure, or who will soon do it. Please offer up a short prayer for these kids as well.

Kristi and I hope to see all of you real soon, so that you can see how well Jessie is doing. Her voices and speech are good, and her left hand is about the same as before surgery...only it isn't in a continuous seizure anymore. She is not able to walk on her own yet, however, her legs are getting stronger and hopefully in a month or so, she will be there.

We had a wonderful visit with Caren Jennings while she was up here this week, and I believe that she may have made a new friend in Jane Stefanik. I know that we have. The Hemispherecomy Foundation will be a HUGE success with these two on the team. I know that many others of you want to be a part of The Hemispherectomy Foundation, and I look forward to working with you. In the meantime, please send emails to Kristi or Caren, and we will file them away until we have projects ready to launch. Thanks again to all of you who have volunteered to help.

God's Rest to all of you tonight. Cris

Friday, July 11, 2008

A Bit of a Fever

http://www.prayforjessie.org

Jessie had a fever last night, and then again tonight. I don't think that it is anyting serious. Hemispherectomy kids commonly have fevers. The main concern is always septic meningitis, but this is not likely to be the problem.

It's kinda funny to see how different doctors handle things like this. The doctor last night saw that Jessie had a fever of 38.5 C and was ready to put her on IV antibiotics, which we ask him to wait til morning. By morning, she had no fever. This afternoon, she had a fever of 40 C and the doctor didn't blink. They're still doing some blood labs, etc to make sure it is nothing to be worried about.

Kristi is with Jessie tonight, and Jess is smiling and talking like nothing is wrong. Each day, more and more of her personality comes back. We are so thankful to be nearing the end of our journey.

Right now, the schedule is that we will be coming home on the 18th, and then into Cooks in-patient rehab. Nothing is final yet, however.

Thanks again to all of you for your prayers for Jessie and our family.

God Bless You! Cris

Wednesday, July 9, 2008

To My Beautiful and Loving Wife of 20 Years

http://www.prayforjessie.org/

Twenty Years ago, today, Kristi and I committed our lives to each other in Lubbock, Texas. We were kids, for the most part; right out of college (Texas Tech University), and ready to face the world. I was deeply in love with her, and I still am. Not to get too mushy, but Kristi and I are true soul mates. We think each others thoughts and depend on each other without reservation. I know, in all things, that Kristi will be there for our family. She is beautiful, both inside and out, and is strong, emotionally, intellectually, and spiritually. I cannot imagine life without her.

With the demands of life and work and kids, we tend to go about our lives, Kristi taking care of her unofficial duties for our family, and I taking care of other things to keep our family running. We work together pretty well, and we always have...we're a good team.

Most days here in Baltimore at Johns Hopkins / Kennedy Krieger. We wake up (last night was my night at the hospital), get Jessie ready for rehab, meet for breakfast, do some work for our actual jobs (BNSF and Alcon), then get ready to go over to take care of Jessie when she gets out of rehab for the day. Somewhere in there, we take care of bills, minor emergencies back home, and day-to-day tasks here.

This morning was a little different. We met for breakfast, and we both wished each other a happy anniversary. We joked a little bit about 20 years being the gauze year for gifts(you know, like 50 is gold, 75 is diamond)...anyway we both thought that was funny in our sick sense of humor. Honestly, neither of us thought about getting the other a gift. We both knew that we had more important things to do with Jessie. There's nothing like having a sick child to remind you how material things aren't really that important.

So, our plans for the night were simple. We would let Jessie play in the playroom with volunteers while we went back to Children's House for a romantic anniversary dinner of leftovers from the night before. The funny thing is that we were perfectly happy with that. We're pretty simple that way. We were looking forward to a little time away from the hospital.

Well, as we were getting ready to leave the room, we look up and in walks our dear friend Caren Jennings from Aledo. We were so stunned, we didn't know what to say. With Caren, was Jane Stefanik and her daughters Sammie and Nikkie. It must have been quite amusing to look at our shocked faces, with jaws on the floor, trying to figure out what was going on. I can't imagine how silly we were, as we stammered for words and tried to hide our embarrassment of not being shaven or made-up...we were definitely "hospital chic", and NOT expecting company.

So, Jane and Caren tell us that they have a surprise for us downstairs, and here is what was waiting for us.

This is the Vending Machine Room at Kennedy Krieger. Well Caren and Jane and the girls had transformed it into a 5-star restaurant. Kristi and I both shed tears of gratitude for such a thoughtful gift.
Complete with candles, champagne, and cards from many friends back home in Aledo, we were seated to a wonderful Mexican dinner, while Caren stayed with Jessie upstairs.
Our musician for the evening was Jane's beautiful daughter Sammie, who played tirelessly for us during the entire evening. We asked her to come talk to us, and she politely told us that the evening was for us and that her job was to play for us. We all got to talk later up in Jessie's room.

This is Jane. She is a selfless woman who has become our friend in Baltimore and has been so nice to us. She has brought cupcakes to the kids in KKI, and dinner for us, and is ready to work for The Hemispherectomy Foundation. She is an angel. The flowers behind her are from Denise Koch, Jack, Meg, and Jo...thanks guys.

Here is Caren, after flying across the country to help us out in Baltimore. She is once again outdoing herself. I don't think that this woman ever sleeps. She collects our mail, runs the foundation at home, mails out orders from the Pinkalicious Boutique (http://www.prayforjessie.org/) , sends care packages to kids who are having hemispherectomies, and plans surprises like this.

If anyone can think of an appropriate Thank You for these two ladies, please let us know, because we honestly can't think of a way to properly say "Thank You".

Here we are having our 20th Anniversary dinner. Now you know what "hospital chic" looks like. What a beautiful table.


Macey and Lilly came down to visit and they danced for us, while Sammie played Sonata on the Violin.
After dinner, Kristi and I went for a walk around the hospital and reflected on our journey.


Here is the group of Jessie's Angels that gave us a 20th Anniversary surprise that we will NEVER forget. God Bless You guys. If you are reading this, please know that we are grateful beyond words and you will always hold a special place in our heart.

Kristi and Cris

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I also wanted to let you know about a little boy from Azle (near Aledo) who had a hemispherectomy today in Detroit. His name is Logan Sylva, and he had a stroke when he was a baby. Please say a prayer for Logan and his mom Mary. http://logansylva.blogspot.com/ Logan is such an inspiration. They are so far from home, and could use some prayers from afar.

In addition, a little girl named Sarah is going to have a hemispherectomy in Cincinnati on Friday. Please say a prayer for this sweet little girl as well. http://sarahblog.meetthealwards.com/ After you read her blog and see her picture, you will understand why I always say that Rasmussen's only attacks the cute little kids. Sarah is such a sweetie. God Bless the Alwards, their family, friends, and community.

God Bless the Alwards and the Sylva family.

http://www.prayforjessie.org